What I see in this is first, a win for patients, who now are more likely to get health care if and when they need it – preventive and otherwise. L’Chaim!

Second, it’s a win for the Obama administration and the Democrats. And although I went to journalism school at Columbia University and was told that “real journalists don’t share their opinions,” I do: I’m a registered, reliable, primary-voting Democrat. The ACA is, so far, President Obama’s signature achievement. This SCOTUS decision supports the President’s goal of simultaneously reining in health care costs and expanding coverage to all. It raises the likelihood of President Obama’s re-election. Cheers!

Finally, and at a deeper level, the decision reflects the power of one man’s thoughtfulness to change the outcome of a seemingly bleak situation. (This can happen in oncology and other kinds of medicine, when most of the doctors or specialists on a case throw up their hands or say “it’s impossible because of blah, blah, blah,” and they might refer to some old published studies on old drugs, or something like that.) What Chief Justice Roberts did was think out-of-the box, carefully and within a legal framework. Like a good, smart doctor, morally grounded and, perhaps, influenced by compassion (hard to tell), the Chief Justice figured out a legally acceptable way for his court to do the right thing. By his wisdom, he will have saved more than a few lives. Bravo!

One advantage of blogging is that I can share my ideas, directly, with people who find them interesting, provocative or otherwise read-worthy. So for those who are curious, here is my general view on health care reform (HCR) by any name, in 3 points:

First, we need it. The U.S. health care system doesn’t work. It doesn’t serve doctors. Good physicians are few and far between in some geographical regions, in primary care and in needed specialties (like oncology and geriatrics). It doesn’t serve people who might be patients, except if they happen to work for a generous employer that offers a good plan (few do), they are rich enough so they might spend thousands each year out-of-pocket and out-of-network, or they are most fortunate of all, having no serious medical problems to contend with or pay for.

Second, although I wholeheartedly support the Affordable Care Act, because it’s a step in the right direction, I don’t think the legislation goes far enough. We need a simpler, single-payer solution, as in a national health care program, Medicare-style, for all. Why? Because the quasi-plan for state-based exchanges, each with competing offerings and not necessarily interpretable terms of coverage, is too complicated. There’s no reason to think a free market operating at the state level would match the public’s or many individuals’ medical needs. As long as each provider is trying to make a buck, or a billion, it won’t put patients’ access to good care first. Besides, there’ll be administrative costs embedded in each exchange that we could live better without. As for private insurers, well, I couldn’t care less about the well-being of those companies or their executives’ incomes.

Profit is not what medical care is about, or should be about. What we need is a simple, national health plan, Europe-style, available to everyone, with minimal paperwork and, yes, limits to care.

Third point – on rationing.

Some of my readers may wonder how I, who support some costly components of good medical care, like providing breast cancer screening for middle-aged women and sometimes giving expensive drugs to people with illness, favor health care reform. New cancer meds cost around $100,000 year, more or less, as do innovative treatments for cystic fibrosis, inflammatory bowel disease, rheumatoid arthritis and other conditions. I don’t think the sane solution is abandoning expensive but life-saving and quality-of-life-improving treatments.

The hardest part of this debate and what’s so rarely discussed is the appropriate limits of medical treatment, not based on costs – which we can certainly afford if we pull back on administrative expenses of health care and insurers’ huge profits – but on factors like prognosis and age. So, for example, maybe a 45 year old man should get a liver transplant ahead of an 80 year old man. Screening for breast cancer, if it is valuable as I think it is, should perhaps be limited to younger women, maybe those less than 70 or 75, based on the potential for life-years saved. Maybe we shouldn’t assign ICU beds to individuals who are over 85, or 95, or 100 years old.

The real issue in HCR, if you ask me, is who would decide on these kinds of questions. That conversation’s barely begun, and I would like to participate in that…

Meanwhile, the Supreme Court is busy doing its thing, sorting out whether the Affordable Care Act is constitutional or not. I’m glad they’re on the case, so that they might find that it stands and we can move on and forward.

Yesterday I took a field trip to meet Regina Holliday, an artist and patient advocate. She fielded questions after a screening of 73 Cents, a short film about why she painted a mural by that name in the days after her husband died with metastatic kidney cancer. He was 39 years old.

At the time of her husband Fred’s diagnosis, both she and her husband held several jobs but he lacked health insurance. In a video, Holliday describes how his diagnosis and care were delayed.

“73 Cents” refers to the price, per page, Holliday needed to pay to get a copy of her husband’s chart when he entered a new medical facility. According to the film, she was told she’d have to wait 21 days to get his records, even though he was acutely ill and dying. Now a widow with two young sons, she pushes for patients’ rights to access to their health records and, more generally, for a patient-centered approach to medical care.

The film-makers’ point: The unreasonable price of the medical records, combined with the delay in receiving them, exemplifies unnecessary harms patients encounter in an outdated, disjointed health care system.

Holliday has several ongoing projects, including the Walking Gallery. In that, she represents health care stories on the backs of people’s jackets. The idea is to take the message of the mural – which is one patient’s story, and necessarily static – and take it further.

About a year ago, I had the opportunity to hear Wendell Potter, author of Deadly Spin – an insider’s sharp critique of the insurance industry, speak at a meeting of the New York Metropolitan Chapter of Physicians for a National Health Program. Despite the cold, dark winter night and midtown dreariness of the meeting location, the large lecture room was packed. I arrived well before Potter’s presentation but couldn’t get a copy of his book; they’d sold out.

The meeting was instructive: I got a sense of Potter’s personal story (he’s from Tennessee, and lived for a while in Appalachia), his previous career (he worked as a journalist, turned to marketing, eventually led PR for Cigna) and his perspective on how people in the health care industry use language to frame the debate on health care reform. Since 2009, when he left his position at Cigna, he writes and speaks critically about the insurance industry.

Potter made several points that clarified my understanding of the insurance companies’ support of the Patient Protection and Affordable Care Act, and why many business-minded sorts are adamant about the individual mandate component in the law.

Insurance companies can’t make a profit without the individual mandate unless they deny coverage to people with pre-existing conditions, he explained. ”Think about it,” he said. “If young and healthy people aren’t going to buy insurance, and insurance companies can’t refuse to cover those with pre-existing conditions, the companies would be responsible only for providing health care to people who choose insurance, including everyone who is sick.”

“Most Republicans who say they favor repeal are disingenuous in that,” he said. “They’re using a smoke screen tactic to persuade the public that they’re against the legislation, but really they support it,” he told. “The insurance companies need it to stay in business,” he added.

The new legislation will also serve most large providers of health care services. That’s because without reform, more and more Americans will go without any insurance. “If you keep shifting the costs of health care to consumers, they won’t buy it,” he said. And without insurance, most people can’t afford all but the most essential medical services – if those.

So the individual mandate assures that the insurance industry can remain profitable. And it serves the health care industry by maximizing the number of healthy people who will participate in health care spending.

In other words (ES): The health care industry needs health care to be affordable to many “consumers.”

Today’s New York Times features an op-ed by Dr. Ezekiel Emanuel, on the oncology drug shortage. It’s a serious problem that’s had too-little attention in the press:

Of the 34 generic cancer drugs on the market, as of this month, 14 were in short supply. They include drugs that are the mainstay of treatment regimens used to cure leukemia, lymphoma and testicular cancer.

Emanuel considers that these cancer drug shortages have led to what amounts to an accidental rationing of cancer meds. Some desperate and/or influential patients (or doctors or hospitals) get their planned chemo and the rest, well, don’t.

Unfortunately, what’s behind this harmful mess is neither a dearth of ingredients nor unsolvable problems at most of the manufacturing plants. Rather, the missing chemotherapies are mainly old and inexpensive, beyond their patent protection, i.e. they’re not so profitable, and not high-priority.

Emanuel proposes that the prices of old oncology meds – drugs that can cost as little as $3 per dose – be raised so that the companies will make it their business to provide them. This seems like a reasonable idea, although I find it a bit too compromising. Why should we raise the costs of any medications above what’s necessary for their manufacture and distribution?

The underlying problem is that we rely on a profit motive to deliver needed health care in the U.S. This kind of financial incentive, even if you find it morally acceptable, doesn’t seem to be working.

That’s why I favor scrapping the system – in which insurance companies siphon off some 30 percent or so of expenses, and pharmaceutical companies take another big cut – and giving patients the care they need, profits aside.

Annual direct costs for cancer care are projected to rise — from $104 billion in 20061 to over $173 billion in 2020 and beyond.2…Medical oncologists directly or indirectly control or influence the majority of cancer care costs, including the use and choice of drugs, the types of supportive care, the frequency of imaging, and the number and extent of hospitalizations…

The article responds, in part, to Dr. Howard Brody’s 2010 proposal that each medical specialty society find five ways to reduce waste in health care. The authors, from the Divisions of Hematology-Oncology and Palliative Care at Virginia Commonwealth University in Richmond VA, offer two lists:

According to the Washington Post coverage, the proposal comes from the United Network for Organ Sharing, a Richmond-based private non-profit group the federal government contracts for allocation of donated organs. From the Times piece:

Under the proposal, patients and kidneys would each be graded, and the healthiest and youngest 20 percent of patients and kidneys would be segregated into a separate pool so that the best kidneys would be given to patients with the longest life expectancies.

I have to admit, I’m glad to see these stories in the media. Any reasoned discussion of policy and reform requires frank talk on health care resources which, even in the best of economic times, are limited.

Last week I had the opportunity to hear Dr. David Blumenthal, head honcho for national health IT development, give a presentation on electronic health records (EHR), the future of health information technology (IT) and meaningful use. He spoke at a health policy colloquium at Weill-Cornell Medical College.

The points he made were clear – to begin, that health IT encompasses three areas of value:

1. Electronic Health Records (EHR)

2. Health Information Exchange (HIE)

3. Clinical Decision support (CDS)

Notes on Electronic Health Records:

“What do patients think if you ask them what’s the value of an EHR?” he half-asked the audience, a group of 250 or so, mainly physicians. He answered: “No more clipboards.”

The problem is that doctors are reluctant to take on electronic systems. Prior to the Health Information Technology for Economic and Clinical Health Act (or HITECH Act) of 2009, only 6 percent of physicians used fully-functional EHRs; only 20 percent used any EHR in their practices. Hospitals weren’t doing any better, he said. We’re running far behind our European counterparts in this arena.

“What’s the barrier?” he asked, and answered: “Money is numbers one through eight. Then logistics, technical problems and fear.”

Physicians, and hospitals, are concerned about buying into systems that will become obsolete. “And it’s a psychological issue,” he added. “That comes in whenever you’re asking people to change.”

The benefit of EHRs will be more efficient care and better health outcomes. As things stand, the quality of a nurse or doctor’s care is limited by the information they have about the patient in front of them. If providers have access to a patient’s compete record – say a cardiologist who’s evaluating a patient with notes provided by the primary care provider (PCP) – that’ll save both parties (patient and doctor) time, reduce duplication of tests and facilitate the coordination of care.

But the real value in EHR, he suggests, is in the system’s potential output of information: “Cutting down the rate of dissemination of conventional information from 17 years down to months to weeks.” What he means, as I understand it, is that by having current findings – published data and recommendations – linked to a patient’s electronic chart and diagnostic codes, the doctors will see and (hopefully) read new materials having to do with their patients’ medical conditions.

Notes on Health Information Exchange:

This component of health IT relies on having a common language. “If physicians don’t speak the same language, their computers won’t either.” He emphasized the need for standard terms using this example: there are many ways to say “high blood pressure” in English; for a health information exchange to be functional, we need to agree on one term and use it.

“Information exchange is a team sport,” he considered further. “It’s a challenge, and we’re not always good at voluntary collaboration.”

Next, he listed some HIE essentials:

– a vocabulary and statistics (I’m not sure why these were paired as he spoke);

– a way of packaging information that it can travel on the Internet;

– electronic directories, so information goes where it should;

– protocols for delivery;

– security in transit.

What will it take to get physicians on board with this kind of plan? “We need economic incentives, trust, and requirements,” he indicated. Mandates might, in the future, involve licensing boards and other accrediting agencies that would test physicians’ competency in HIT. In his view, managing electronic information is an essential skill for doctors to provide effective medical care.

Notes on Clinical Decision Support:

First, he listed the four elements – algorithms, statistics, guidelines and institutional policy – that can be incorporated into CDS to promote evidence-based practice.

Second, CDS allows for Computerized Provider Order Entry (CPOE). This is a huge benefit at several levels, but the surprise for some in the audience is that the process becomes an opportunity for continuing medical education (CME).

(The idea for doctors’ learning as they enter orders, which I think important, is this, and I’ll provide my own example here: if you’re a physician about to order a drug, like a new antibiotic for a patient who’s got liver failure, the computerized system might have a pop-up message that says “are you sure you want to order that? Antibiotic X is metabolized by the liver…” And so you’d learn that the new antibiotic X is metabolized by the liver, and you might then look over a readily-accessible table of alternative antibiotics.)

“This caught my interest because it doesn’t diminish physicians’ autonomy,” he said. It just enables them to make decisions for their patients in the context of additional, current information. “The end goal is not to adopt technology, but to improve care.”

Notes on Meaningful Use:

He listed “five pillars of meaningful use”:

1. patient and family enlightenment

2. coordinated care

3. quality, safety and efficiency

4. privacy and security

5. improved public and population health

Then the discussion turned to some big money questions – including a critical issue having to do with companies competing to develop better EHR systems and physicians’ incentives. If you’d like to read more details about meaningful use, I recommend a recent perspective in the New England Journal of Medicine and a brief in the August issue of Health Affairs, to which Blumenthal referred during his informative talk.

—

As for me, I’m tired of clipboards. I look forward to expanded health IT and EHRs. In the future, patients will be more informed in their decisions, and doctors will be in theirs. Maybe, sometime…

This week’s medical blog Grand Rounds will focus on posts having to do with “customer service” in health care. A problematic concept, it seems to me.

As a physician I never considered my patients as buyers or consumers. People came to me as their doctor, or I visited them in the hospital, and I thought my job was to identify if something was wrong and, if so, to identify the exact nature of the problem and then take care of the person as best I could. I didn’t contemplate the situation with a business mind-set.

As a patient I don’t think in shopping terms when I visit my doctors or my physical therapist, although I do sometimes pay significant bills. Even for lab services, such as at Quest Diagnostics, I don’t feel as if I’m making a purchase. Sure, I’m annoyed when there’s a long wait or my results are inexplicably delayed. And I sometimes prefer one technician to another. I might mind the costs, and if there’s an error in my bill I’ll challenge that. Still, I don’t perceive myself as a health care customer.

In medical journals a patient typically is called a person, an individual, a subject in a clinical trial or (unfortunately) a case. But in some blogs and other sources I’ve been reading lately, most often having to do with health care delivery or IT, consumers pop up constantly. A good example occurs in a recent article in the journal Health Affairs, “Evidence That Consumers Are Skeptical About Evidence-Based Health Care.” This study generated a small brouhaha (in my opinion undeserved) about the public’s alleged blind faith in their personal physicians’ advice.

In reviewing that story, what most surprised me most about the paper was not so much the study’s findings (limited) or sponsorship (by the National Business Group on Health), but its language. The term “consumer” or “consumers” appears in the article’s title, no fewer than 5 times in the 125-word abstract and a noteworthy 39 times in the main paper excluding captions, tables, and references.

My point, which is really a question, is whether people who seek out or need health care should be referred to as consumers or customers. My gut feeling is that neither term is appropriate. But then again, I don’t believe that medicine can be or should be run as a business. Here’s why:

If physicians are in a position that they might be influenced by a profit motive, they’re less likely to make decisions based in evidence and are more likely to make recommendations that include income-generating procedures and treatments.

If people receive medical care from physicians who might generate greater income by recommending particular treatments, procedures or referrals, they may not receive the most appropriate care. What’s more, they are less likely to trust that their physicians are providing sound advice. The upshot is that when expensive medical care is needed – say, for the sake of this discussion, in the case of a young person with a curable leukemia – some individuals may be less trusting of physicians if they think they are motivated by money and may decline helpful and even life-saving treatments. So the profit motive, or even the appearance of a possible profit motive, has the potential to lessen the patient-doctor relationship and undermine good care.

What’s worse, though, and even more off-putting, is that in a financial transaction for medical care – in which a person with or without an illness is referred to as a “consumer” in a business called the health care industry – what’s really happening is that the illness, and maybe even the patient who has an illness, is rendered a commodity.

Ultimately this is the greatest downside of medicine as a business. No. I don’t think patients should be considered as customers or clients by any other name.

Nurse Jackie’s back on TV tonight. I know this because when I logged on to the New York Timesthis morning her ad flashed right at me, front page and right center. She’s displayed prominently on Huff Po, vanishingly on Dictionary.com. With just a quick search I can’t find her anywhere in the Wall Street Journal. At the LA Times she takes over the screen.

Poster for Nurse Jackie, Season 2

(As an aside, on the shifting nature of medical information, most future readers of this post will not know for sure if what I’ve described about the present on-line positioning of these commercials for TV is true. The same happens in practicing medicine, when clear signs of disease – like abnormal crackles on a lung exam – can be fleeting, leaving no digital or even a film imprint, yet very real. So you’ll have to trust me, or take no value from this depiction.)

For the “facts” on Nurse Jackie you can find her on Showtime’s original website. There, the program promises to continue “its look deep inside the complicated heart and soul of a functioning addict, a loving wife, mother, and a first-class nurse.” I’m curious but must admit that last year I watched only part of one episode and didn’t return.

Back then I was turned off preemptively by the image of Edie Falco looking harsh, white-coated and unsmiling. The syringe and needle in her raised, gloved hand suggested a third finger, or at least that’s how it seemed as we drove past her image, repeatedly, on a giant billboard. That poster was enough for me. I’d spent too much time in hospitals in trust of innumerable nurses to want to see that side of health care delivery.

But today she beckons, half-smiling, an aura of pills and syringes above her head. Maybe she’s happy about the health care reform bill’s passage last night, but I don’t think she could have known about that when the photo was taken, or in her TV unreality world, that legislation matters. What’s clear is that Nurse Jackie looks warmer, tired maybe from her work. She’s appears ready to help someone, a stethoscope slung over her neck. Her right arm is raised, like in last year’s pose, but gentler, calmer. It’s no accident the poster heralds a “Holy Shift.”

Back to reality –

This morning I was listening to WNYC while reading the newspaper and eating my healthy breakfast. As I recall, according to a reporter assigned to assess the public’s and health care workers’ response to the health care reform bill among people on the street near Lenox Hill Hospital, in my neighborhood, one individual said she doesn’t really know what to expect from the changes because she gets most of her news from TV. I didn’t catch any more details – if she meant CNN, for example, or Fox or The View – and exactly how and why she found the source limiting.

One thing I did note in the Times, and also on the Kaiser Health News website, both of which provide excellent summaries of the hopefully-real health care changes to come, is that reform won’t even start to happen for the most part until 2014. Meanwhile grows an authentic addiction to the Internet, TV, radio and even some blurry advertisements for information on medicine that people can’t or don’t get elsewhere.

So I’m thinking I should watch Nurse Jackie tonight. Give it another try. Maybe I’ll learn something. And whatever did happen to the House of God?

I like the idea that we can make smart choices, eat sensible amounts of whole foods and not the wrong foods, exercise, not smoke, maintain balance (whatever that means in 2010) and in doing so, be responsible for our health. Check, plus.

It’s an attractive concept, really, that we can determine our medical circumstances by informed decisions and a vital lifestyle. It appeals to the well – that we’re OK, on the other side, doing something right.

There is order in the world. God exists. etc.

Very appealing. There’s utility in this outlook, besides. To the extent that we can influence our well-being and lessen the likelihood of some diseases, of course we can! and should adjust our lack-of-dieting, drinking, smoking, arms firing, boxing and whatever else damaging it is that we do to ourselves.

I’m all for people adjusting their behavior and knowing they’re accountable for the consequences. And I’m not keen on a victim’s mentality for those who are ill.

So far so good –

Last summer former Whole Foods CEO John Mackey offered an unsympathetic op-ed in The Wall Street Journal on the subject of health care reform. He provides the “correct” i.e. unedited version in the CEO’s blog:

“Many promoters of health care reform believe that people have an intrinsic ethical right to health care… While all of us can empathize with those who are sick, how can we say that all people have any more of an intrinsic right to health care than they have an intrinsic right to food, clothing, owning their own homes, a car or a personal computer? …

“Rather than increase governmental spending and control, what we need to do is address the root causes of disease and poor health. This begins with the realization that every American adult is responsible for their own health. Unfortunately many of our health care problems are self-inflicted…

Now, here’s the rub. While all of us can empathize, not everyone does. And few citizens go to medical school. Some, uneducated or misinformed, might sincerely believe that illnesses are deserved.

So let’s set some facts straight on real illness and would-be uninsurable people like me:

Most people who are sick – with leukemia, diabetes, osteogenesis imperfecta, heart disease, multiple sclerosis, scoliosis, glycogen storage disease Type II, depression, Lou Gehrig’s disease, sickle cell anemia, rheumatoid arthritis or what have you – are not ill by choice. They didn’t make bad decisions or do anything worse, on average, than people who are healthy.

Rather, they became ill. Just like that.

The idea of an insurance pool is that when everyone in the community participates, whoever ends up with large medical expenses is covered, explained Jonathan Cohn. When contributions come in from all, including those who are healthy, funds are sufficient to provide for the sick among us.

As things stand, the insurance industry divides us into likely profitable and unprofitable segments. “So you know if you’re one of the people born with diabetes, you have cancer, you had an injury that requires lengthy rehabilitation, tough luck, you’re going to end up in that pool of unhealthy people,” Cohn said.

Insurance is no cure-all, to be sure. It won’t take away my cousin’s cancer or fix Bill Clinton’s heart. That would require research and better medicines.

Depriving insurance, or care, to those who need it most is inconceivable to a society as ours was intended. It’s uncivil.